Thursday, August 27, 2009

Thanks Larry!

My mom's friend put together a video of Alexis and family and put it on you tube...

Go to www.youtube.com and in the search bar type: larryinbristol

Wednesday, August 26, 2009

Swine Flu, Fussy Muscles, and Grabby Hands



Nicholas's school was on the news the past 3 days because of swine flu. A student has type A influenza which, in 98% of cases means they have the H1N1 virus. Great. Luckily, the child was diagnosed over the weekend and hasn't been to school this week. The school has been disinfected. I had to go to a meeting at the school tonight and when I walked in, my first thought was, "is there a swimming pool in this building?" Ahhhhh. Cleaning chemicals. And they installed hand sanitizer stations. Good.

At Lexi's last pediatrician appt., Dr. M strongly advised us to all get the flu shot and, when it's available, the H1N1 vaccine. Since Alexis can't get the vaccinations until 6 months old, it's important that everyone around her get the shots. Yuck. I'm so lucky that I have such healthy kids. Never had the flu shots, never had more than the 24 hour bug. But all the news coverage and the talk with my doctor make it sound soooooo scary--especially when you have an infant at home--an infant with a heart condition. Guess we'll be getting the vaccines this year. I'm already planning in my head what I'll do for the boys after their injections. Sucker? Ice cream? Toys? A new pony?

We had our first OT session on Thursday and our first PT session on Tuesday. So far so good. Except that my sweet little angel baby cried and fussed and was mad the whole time. Murphy's Law at work. They assessed her muscle tone, did some exercises with her, gave me suggestions of things to do with her like tummy time, encourage the pacifier, etc. The most interesting thing I learned was when the PT said, "she does have low muscle tone, but she's still really strong!" I had always thought of muscle tone and strength as being the same thing. Nope. You can tell Alexis has low muscle tone because of how her arms and legs fall to the sides when she's laying on her back, but you can also tell that she's very strong when she grasps on to things and kicks out her legs. Her strength will help her a lot with dealing with the low muscle tone.

I'm excited that she is finally reaching for things. She's reached for a few things before but I could never tell if it was just coincidental that she was stretching her arm out in the direction of something. But now it's more frequent and even PT would say, "that was an intentional grasp!" Yeah. At least in all her crying and fussing during the PT session, she still impressed them. PT and OT are now scheduled to take place on alternating Thursdays.

Friday, August 21, 2009

The Special Mother, by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become mothers of disabled children. Did you ever wonder how these women were chosen? Somehow I visualize God hovering over Earth, selecting his instruments for propagation, with great care and deliberation. As He observes, He instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron saint...Cecilia."

"Rutledge, Carrie, twins. Patron saint...give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles. "Give her a child with a disability."

The angel is curious. "Why this one God? She's so happy."

"Exactly. Could I give a child with a disability a mother who doesn't know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience or she'll drown in a sea of self pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today, she has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world, and that's not going to be easy."

"But Lord, I don't think she believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness, is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes she is a woman whom I will bless with a child less than perfect. She doesn't realize it yet but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy' for the first time, she will be witness to a miracle and know it. When she describes a tree or sunset to her child, she will see it as few people see my creations."

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice... and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is there by my side."

"And what about her patron saint?" asks the angel, his pen poised mid air.

God smiles. "A mirror will suffice."

Tuesday, August 18, 2009

Like my Legs?

It's hard to count the number of times I've heard, "boy I wish they'd had those when you kids were little!" Apparently, 36 years ago, diapers, cribs, and formula had not yet been invented. "And we took you home from the hospital sitting in my lap because no one had carseats." I'm just amazed they didn't have to walk home from the hospital, in the snow, uphill, barefoot.


It's amazing what has been invented just since my 4 year old was born.


When Alexis was discharged from the hospital, not only did they send us home with formula, but we were given these single serving packets of formula. I already have the divided container that I can store premeasured amounts to carry in my diaper bag, but it's nice to have these little packets of formula as a convenient emergency supply. I was recently told by someone that these aren't new, but I've never had a baby on Enfamil, so these handy packets were new to me.



The newborn sized diapers that I purchase are the same brand that Nicholas and Blake used. but now there is a stripe that runs the length of the diaper. The faint yellow stripe turns blue when the diaper is wet. GENIUS! So much easier than squeezing the diaper and making a guess. Or pulling open the leg hole to check or sticking in your finger to feel for wetness. Yuck. A simple blue line. I had a coupon for the Huggies equivalent and found it interesting that while their newborn diaper had this same stripe, the size 1 diapers do not. Apparently, when the baby hits 10 pounds and moves up to the size 1, the stripe is no longer needed. At 10 pounds, my baby should be able to inform me of her wetness status. Maybe "genius" is too stong a word...


Have you seen the Bumbo seat? A sturdy, supportive, cushioned seat that a baby can sit upright in before they're able to sit upright on their own. A baby should be able to use it as soon as they can support their own head. BRILLIANT. How nice for a baby to get to watch something other than a ceiling fan! Although I will admit, the ceiling fan has become our best form of baby entertainment.

And finally, and this one wins simply for the cuteness factor, babylegs. Adorable, fashionable, baby legwarmers. Alexis finally today wore hers for the first time. In this hot muggy weather, she is most comfortable in a simple onesie, but when we suddenly get blasted by air conditioning, how easy it is to put on her babylegs. She can be strapped in her car seat and doesn't have to be unbuckled to put them on. Babylegs also make it easier on the knees when babies start to crawl. And all the different colors and patters are SO ADORABLE!! I had some happenin' legwarmers back in the 80's, but I wasn't nearly this cute. Shocking I know, but trust me on this one.


Monday, August 17, 2009

Reunion

Yesterday was the St. Vincent annual NICU reunion picnic. From 1-4p.m. (it was HOT!) at a park in Zionsville our whole family was invited to go and eat and play and see some of Lexi's NICU nurses. I had no idea what to expect. Wow. Hundreds of people were there. I've never seen so many multiples in my life. It's funny seeing all the triplet and quad strollers rolling around. They had about 8 huge bounce houses which the boys LOVED! Hamburgers, hot dogs, brats. Lots of games and prizes, although Blake and Nick never got out of the bounce houses long enough to do anything else. The best part for me though was to see some of our old nurses. Several weren't there of course because they were working or just not able to come. But we still saw several of our favorites. They all remembered Alexis since she was probably one of their most recent patients. Dr. A was there and it was so nice to see her. She even called me Kendra instead of Mrs. Smith! She asked me to keep her informed of when Alexis has her heart surgery as she may try to stop by the hospital at that time.

Today I talked to our new First Steps OT. She will come for our first OT session on Thursday at 9:30 and it will be our standing appointment every other week. The calendar is filling up fast. Preschool starts September 9 which will be M,W,F mornings. Can't wait to see how we fit in PT because apparently they had to beg and plead for her to take us on since she was already full.

Nicholas started his second week of kindergarten today. I'm so glad he's enjoying himself and is happy to tell me about his day. On every paper he has brought home so far (tracing letters, cutting lines) he has decorated with a drawing of a Transformer. Monster trucks are out. Transformers are IN. Until next week anyway.

Friday, August 14, 2009

A Video!!

Alexis went to the pediatrician yesterday for her 4 month check up and weighed in at exactly 10 pounds. I'd say we've come a long way from this little 5 and a half pound peanut I gave birth to. Dr. M. thinks that she looks great and was highly amused by how much she interacted with her by smiling and cooing. I love it when she puts on a good show! Dr. M was also very pleased that Lexi was on the growth chart in the 3rd percentile. There are "Down Syndrome growth charts" and then there are the typical growth charts. I think she's in the 25th percentile of the D/S growth chart and I was thrilled to know she even made it on the other growth chart. We go back to the pediatrician in 2 months.

video

I turned in my resignation to CICOA. I had heard rumors that there were going to be some changes in the job description and then early this week received an e-mail informing us of our new responsibilities. I had every intention of going back to work sometime after Alexis had totally recovered from her heart surgery. It's nice having a little extra cash coming in and the job was the most flexible in the world. Unfortunately, they gave us more responsibility, less flexibility, and not nearly enough pay for the extra work. I'm a bit bummed, but at the same time, I was still having a hard time picturing myself leaving Alexis for a full day at a time. I'm just very grateful that my husband has a job that allows me the opportunity to be home with my children.

Wednesday, August 12, 2009

Kindergarten







Today was Nicholas's first day of kindergarten. I survived. We walked to the bus stop at the Dyars house. I'm so glad their son Jackson also rides the bus. It's a familiar face for Nicholas. And we got to meet Jackson's brand new sister, Meredith. We had to introduce Alexis and Meredith, because they are now best friends, whether they want to be or not. Anyway, the bus came, Nicholas hopped right on, sat in the front seat (where he was instructed to sit because he's in kindergarten), and off he went. My eyes got a bit damp, but I held it together. Luckily I have 2 great distractions at all times.
The bus doesn't bring Nick home, so at 11:15 we pick him up. He came out with his teacher Miss Grey and had a huge smile on his face. He said it was fun, especially playing on the playground and can't wait to go back tomorrow. Thank You God!!! I can't help but remember his very difficult time adjusting to preschool. Boy has my kid grown up. I'm a very proud Mommy.

Saturday, August 8, 2009

Baby of Faith



I just returned home from my yearly Women of Faith conference. If you haven't attended one, you should. Unless you're a man. Men, stay home. It might be dangerous for you...like an arsonist surrounded by a bunch of firefighters.

This was my 3rd year attending the conference. Also in attendance were my mom, my aunt, sister-in-law and Alexis. And about 12,000 other women. I believe the Women of Faith series is the largest Christian women's conference in the country. There are several fabulous speakers, great singers, and a whole lotta love. Steven Curtis Chapman performed last night (my new line that I picked up from him this weekend regarding having 3 kids: "this is Eenie, Meenie, and Miney. There ain't no Mo!") and today we got to hear Mandisa sing. Remember her? From American Idol? She's fabulous--even better than in her Idol days. It was fun hearing her talk about her Idol experience. Lisa Whelchel was one of the speakers. She played Blair in The Facts of Life and spoke of her experience moving to LA, without her parents, at the tender age of 12! Can you even imagine?? Anyhoo, I always leave the conference feeling renewed, refreshed, and with next year's tickets already purchased.

Alexis was the perfect, content, and often sleeping baby. And she was a hit. It's amazing how everyone comments on her. People always ask how old she is and when they realize she isn't just a few days old, they then ask if she was a premie. There are a lot of questions I'm still trying to figure out how to answer. With strangers, when they ask if she's a premie, I sometimes say "no" and smile and walk on. Often this weekend, when people would look shocked by how small she was at 4 months of age, I would often respond with, "no, she isn't a premie. She just had some stuff going on and now we're playing catch up on her weight." They usually let it go at that. I can often be the type to offer up too much information, but I've tried to be better about this. (Do you like how I just wrote that comment on a blog that anyone in the world can access?)

Even my boys don't know yet that Alexis has Downs. They see nothing wrong with Alexis, wouldn't really understand anyway, and while it's not like it's a big secret, I don't see the point of sitting them down for a discussion on Alexis's diagnoses. They may wonder in the near future why people (i.e. First Steps) are coming into our house to work with Alexis and at that point I'm sure we'll talk a bit about how Alexis needs a little exercise because it may take her a little longer to learn to do things. But for now, they just know that Alexis is their baby sister and when you talk to her in a baby voice, she smiles at you. And you shouldn't stick Playmobile toys in her face.

Tuesday, August 4, 2009

School starts next week and I'm still waiting for my summer to start!



I had a nice trip to Elkhart with the kids for the weekend. We fit in one last trip before school starts. It was so nice getting together with my friend Amy who I had not seen since high school and then the next day getting together with my friend Megan who I hadn't seen since my wedding almost 10 years ago. Good ole facebook...it's amazing how many people I've reconnected with. Thanks Mom and Dad for watching the boys so I could see my friends! Brent and Elizabeth made an overnight trip to Chicago for Brent to run a half marathon, but we were still able to fit in a couple visits with them and the kids.

The kids and I came home yesterday because we had a lot going on today. Alexis had an appointment today with Dr. B, the pediatric surgeon who performed the duodenal atresia surgery when she was 2 days old. Today was just a follow up and they were very pleased with how great Alexis is doing. As with any abdominal surgery, there is always the risk of scarring which can cause a blockage in the bowel line. The risk never goes away but does decrease with age. So I know the signs to look for: distended stomach, excessive spit up, etc. But we don't need to return to see Dr. B. unless a concern arises. WOO HOO!! Cross one doctor off the list!

While Alexis and I were at the doctor, Jason took the boys to the dentist. According to Jason, the boys were great! Blake had impressions done and Nicholas had x-rays. Don't know why Blake had impressions (men don't ask enough questions!) but they are cavity free. Yeah!

And then this afternoon we had a meeting with First Steps to come up with goals and a plan for Alexis. They asked what goals I had for Alexis. I told them that as a very biased mother I already thought she was perfect and didn't need anything. But I realize that with Down Syndrome she is expected to have low muscle tone, so improved muscle tone would be my goal. The therapist then took over to make goals like "smoothly track objects 180 degrees" and "bring hands up to her midline". Whatever. Just give me a happy, healthy kid. But really, I am excited to have Alexis start working with First Steps. She will receive OT and PT every other week and the therapists ought to call in about 2 weeks to set up our first appointments. She will be reassessed every 6 months.

The boys will go to Kokomo tomorrow night and stay until this weekend. With school starting next week, we have to fit in any overnights now while we can. I can't believe I will have a kindergartener!! I don't look forward to putting my baby on the school bus for the first time. It could get ugly. Wonder if I could hide somewhere on the bus. Or if the driver would let me install a camera. Is 5 years old too young to give Nick a cell phone so he can call me if he needs me?